Tuesday, 17 February 2009

Talking to people with complex communication needs

Last Friday was a great day for me. I was exhausted, fed up and not looking forward to a long drive to see a patient for what looked like a really complex assessment.

When I got to the appointment I met a young woman with Cerebral Palsy who has very complex communication needs. She used a low tech coded eye pointing AAC system with her personal assistant to communicate with me during the appointment. I wont bore you with the details but we chatted away and, in collaboration with the equipment rep, came to a decision about how to move forwards.

At the end of the assessment the pateint thanked me for holding the conversation directly with her and not with the PA. She explained how degraded and angry she felt when interacting (or not) with other people and in particular health professionals.

I later had a converstaion with another patient, her communication aid had broken down. As you would expect, her communication difficulties meant conveying this problem to the people who needed to know to fix it was a real challenge. The really sad part was that her sister had recently died and throughout the last days of her sisters life she had experienced a constant battle with health care staff trying to contact her to update her on her sisters condition but being thrown completey by her significantly dysarthric speech. The callers had had differing responses ranging from shouting on the phone, asking if they could call her carer and even hanging up.

She asked me how our service educated other health professionals about how to talk with people with communication difficulties. The challenge is that as a regional service we dont have that day to day contact with local teams to be able to convey this information as we might like. This continues to be source of frustartion for me so I urge anyoen reading this to take the time to take a look at the excellent leaflet from Communication Matters to get more information. The feel good factor was that, despite her speech disorder we were able to chat, to get to the bottom of the problem she called about and I was motivated to publish this post.


  1. I find working with people who have communication disorders a real challenge. Most of the time the communication issues are around language (we have some immigrant refugees who attend the service), but also around hearing loss. I find myself getting impatient, and it's difficult to slow down and wait. I agree it's really important to learn how to cope with communication problems - but how I wish there was some sort of direct brain-to-brain communication device!

  2. will you email me? my address is on my blog...yes i plan to submit to carnival, gotta think about what to write about. i enjoy your comments - im a lurker on yours/others...fieldwork is stressful and I just don't do things I should. I admire your skill in AAC/technology...you're a smartie pants :)

  3. Karen - being a bit stupid here but cant see your email? Email me at buckeyebrit@googlemail.com and less of the smartiepants! lol

  4. Hi- My daughter has classic autism and she is non-verbal, i'm hoping to look more into AAC technology. She is using PECS (picture exchange communication system).

    She also has severe sensory processing difficulties. She has an OT but due to money/resources we dont get to see her much.

    To the first comment 'healthskills' - I can imagine it to be quite difficult to try to communicate with a deaf person..fortunatly most deaf people are able to use body language, unlike people with Autism. It really does open your eyes to communication problems having a non-verbal autistic child, it certainly has opened my eyes. I too wish there was a brain to brain communication device haha.

    Nice to meet you :)

  5. Hi Halo - thanks for stopping by! How is Twinkle getting on with PECS? AAC is such a huge continuum of options there is a lot out there but it's important to go at the right speed.